Disabling a family? Emotional dilemmas experienced in becoming a parent of a child with learning disabilities

Becoming the parent of a child diagnosed with learning disabilities can have a dramatic impact. Chrissie Rogers, the author of this article, is both a lecturer in education studies at Keele University and the mother of a daughter who has learning disabilities. She argues here that the pressures on mothers to produce ‘perfect’ babies and to meet all their needs are immense. These pressures arise from both internalised norms and societal expectations and, in the face of these pressures, parents may feel shock, loss and disappointment. These feelings may lead, in turn, to denial, anxiety and conflict affecting both the parents and the professionals involved with the family. Drawing on a series of in-depth interviews and personal narratives, Chrissie Rogers makes a powerful case for the importance of support, whether that support is formal or informal. She suggests that, without the right levels of support and understanding, having a child with a diagnosis of learning disability can disable the whole family.

Learning to live with Parkinson’s disease in the family unit:an interpretative phenomenological analysis of well-being

We investigated family members’ lived experience of Parkinson’s disease (PD) aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey.

Perceptions of family environment, body image and self-esteem of eating disordered and non-eating disordered women

This study explored the perceptions of family environment, body image and self esteem of women who suffer from anorexia nervosa, bulimia nervosa, and depression. Using a nonequivalent control group design, one hundred and fifty women with anorexia nervosa (n = 50), bulimia nervosa (n = 50), and depression (n = 50) were given the Family Environment Scale (FES) and the Eating Disorders Inventory-2 (EDI-2). The objectives of this study were to: (1) study how women with anorexia nervosa and bulimia nervosa perceive their family environment as measured by the FES; (2) compare and contrast perceptions of family environment of women with anorexia nervosa and bulimia nervosa with the control group; (3) compare and contrast perceived levels of self esteem and body image as measured by the EDI-2 of women with anorexia nervosa and bulimia nervosa with the control group; and (4) examine the perceived family environments of eating disordered and non-eating disordered women with regard to body image and self esteem. Results suggested, women who suffered from anorexia nervosa or bulimia nervosa scored significantly lower (p $<$.021) on the Expressiveness, Intellectual-Cultural Orientation, and Active-Recreational subscales of the FES. The results also indicated that women who suffered from bulimia nervosa scored significantly higher (p $<$.015) than women who suffered from anorexia nervosa on the Conflict and Independence subscales of the FES. The results of studying these three populations reflected that women who suffered from anorexia nervosa scored significantly different (p $<$.000) than women who suffered from bulimia nervosa on many of the subscales of the EDI-2. The findings of the study confirmed that women who suffered from anorexia nervosa or bulimia nervosa scored significantly different (p $<$.000) on the subscales of the EDI-2 compared to women who suffered from depression. It was also confirmed that a relationship does exist between perceptions of body image and self esteem and perceptions of family environment amongst women with anorexia nervosa and bulimia nervosa as compared to depressed women. The findings of the study indicated that women who suffered from anorexia nervosa tended to: be less expressive and independent; handle conflict less openly; have a greater drive for thinness; have greater body dissatisfaction; be more perfectionistic; and struggle more intensely with fears around maturity and social insecurity than did women who suffered from bulimia nervosa or depression. In addition, the findings of the study also suggested that women who suffered from bulimia nervosa tended to: be raised in homes where openly expressed anger is permitted amongst family members; have a lesser drive for thinness; have less body dissatisfaction; be less perfectionistic; and not struggle as intensely with fears around maturity and social insecurity as do women who suffered from anorexia nervosa, but more than women who suffer from depression. Treatment implications that may assist community college professors and counselors in meeting the special needs of this special group of women were also discussed. (Abstract shortened by UMI.) ^

Stressors, mediators, and health care outcomes of home enteral nutrition in family caregivers and their older adult care recipients

Family caregivers manage home enteral nutrition (HEN) for over 77% of an estimated 1 of every 400 Medicare recipients. Increasing usage of HEN in older adults combined with reliance on family caregivers raises concerns for the quality, outcomes, and costs of care. These concerns are relevant in light of Medicare limitations on nursing assistance and non-reimbursement for nutrition services, despite annual costs of over $600 million. This study applied stress process theories to assess stressor, mediator, and outcome variables salient to HEN and caregiving. In-home structured interviews occurred with a multi-ethnic sample of 30 caregiving dyads at 1–3 months after discharge on HEN. Care recipients were aged ≥60 (M = 68.4 years) and did not have dementia. Caregivers were aged ≥21, unpaid, and lived within 45 minutes of care recipients. Caregivers performed an average of 19.7 tasks daily for 61.9 hours weekly. Training needs were identified for 33 functional, care management, technical, and nutritional tasks. Preparedness scores were low (M = 1.73/4.0), and positively correlated with competence, self-rated quality of care and positive feelings, and negatively with overload, role captivity, and negative feelings (Ps < .05). Caregivers had multiple changes in lifestyle and dietary behaviors. Lifestyle changes positively correlated with overload, and negatively with preparedness and positive feelings. Dietary changes positively correlated with number of tasks, overload, role captivity and negative feelings, and negatively with preparedness (Ps < .01). Fifty-seven percent of caregivers aged >50 were at nutrition risk. Care recipients fared worse. Average weight change was −4.35 pounds (P < .001). Physical complications interrupted daily enteral infusions. Water intake was half of fluid need and associated with signs of dehydration (P < .001). Physical and social function was poor, with older subjects more impaired ( P < .04). Those with better prepared or less overloaded caregivers had higher functionality and QOL (P < .002). Complications, type of feeding tube, and caregiver preparedness correlated with frequency of health care utilization (Ps < .05). Efficacy of HEN in older adults requires specialized caregiver training, attention to caregivers' needs, and frequent monitoring from a highly skilled multidisciplinary team including dietitians. ^

Differences in treatment and intervention needs of girls arrested for status versus criminal offenses

The purpose of this research was to explore the differences in factors associated with girls' status and criminal arrests. This study used data from six juvenile justice programs in multiple states, which was derived from the Juvenile Assessment and Intervention System (JAIS). The sample of 908 adolescent girls (ages 13-19) was ethnically and racially diverse (41% African American, 32% white, 12% Hispanic, 11% Native American and 4% Other). A structural equation model (SEM) was analyzed which tested the potential effects of adolescent substance use, truancy, suicidal ideation/attempt, self-harm, peer legal trouble, parental criminal history and parental and non-parental abuse on type of offense (status and criminal) and whether any of these relationships varied as a function of race/ethnicity. ^ Complex relationships emerged regarding both status and more serious criminal arrests. One of the most important findings was that distinct and different patterns of factors were associated with status arrests compared to criminal arrests. For example, truancy and parental abuse were directly associated with status offenses, whereas parental criminal history was directly related to criminal arrests. However, both status and criminal arrests shared common associations, including substance use, which signifies that certain variables are influential regarding both non-criminal and more serious crimes. In addition, significant meditating influences were observed which help to explain some underlying mechanisms involved in girls' arrest patterns. Finally, race/ethnicity moderated a key relationship, which has serious implications for treatment. ^ In conclusion, the present study is an important contribution to research regarding girls' delinquency in that it overcomes limitations in the existing literature in four primary areas: (1) it utilizes a large, multi-state, ethnically and racially diverse sample of justice system-involved girls, (2) it examines numerous co-occurring factors influencing delinquency from multiple domains (family, school, peers, etc.) simultaneously, (3) it formally examines race/ethnicity as a moderator of these multivariate relationships, and (4) it looks at status and criminal arrests independently in order to highlight possible differences in the patterning of risk factors associated with each. These findings have important implications for prevention, treatment and interventions with girls involved in the juvenile justice system.^

A comprehensive assessment of self -report experiences of adoptive parents of special needs children in Florida

Adoption of special needs children is now seen as a life long event whereby the adoptive child and family have unique needs. The need for postplacement resources throughout the life cycle of the adoption process is evident. This exploratory-descriptive research employed a random stratified cross-sectional design. The purpose of the study was to describe, identify, examine, and assess the relative influence of identified empirically and conceptually relevant variables of self-report experiences of adoptive parents of special needs children. Primary areas of exploration included: (1) adoptive children and families' characteristics, (2) postplacement service needs, utilization and satisfaction, and (3) adoptive parents' perceptions of their adoption experiences. A proportionate stratified random mail survey was used to obtain 474 families who had adopted special needs children from the 15 geographic districts which make up the state adoption social service agency in Florida. A 144-item survey questionnaire was used to collect basic information on demographic data, service provision, and adoption experiences. Four research questions were analyzed to test the effect the predictor variables had on willingness to adopt another special needs child, successful adoption, satisfying experience, and realism about problems. All four research questions revealed that the full model and the child's antecedent and the adoptive parents' intervening variable blocks were significant in explaining the variance in the dependent variables. The child's intervening variables alone were only significant in explaining the variance for one of the dependent variables. The results of the statistical analysis on the fifth research question and the three hypotheses determined that (1) only one postplacement service, crisis intervention, had a statistically significant impact on the adoptive parents' perceived level of satisfaction with the adoption experience; (2) adoptive parents who rate their adoption as successful are more likely to express a desire to adopt another special needs child; (3) the more adequate information on the child the adoptive parents perceived that they had prior to placement, the more they perceived they were realistic about the problems they would encounter; and (4) six specific postplacement services were found to be significant in predicting successful adoptions--crisis intervention, outpatient drug/alcohol treatment, maintenance subsidy, physical therapy, special medical equipment, and family counseling. Implications for the social work field and future research are discussed. ^

The development of an online neonatal intensive care unit family education

Background: British Columbia’s Fraser Health Authority (FHA) neonatal intensive care units (NICUs) value family centered care (FCC). Nevertheless, there is limited evidence that FCC is actually incorporated into practice, as well as some concern that FHA NICU education is inaccessible, inconsistent, or disorganized. Purpose: The mission of this project is to support the principles of FCC throughout the development of an FHA online NICU family education guide by reflecting upon the needs of families throughout their NICU journey. Methods: A needs assessment was initially completed and included literature reviews, consultations, and an environmental scan. This data informed development of an online NICU family education guide which plots current education materials along key stages of the NICU journey: prenatal, admission, early days, growing and developing, discharge and at home. For the purposes of this practicum, only the prenatal stage was fully developed and will serve as a template for other stages following a formative evaluation. A pamphlet and revised FHA Neonatal Checkpoint will also be developed to augment teaching by health care professionals. Implementation and evaluation plans were adapted from the Center for Disease Control Framework for Program Evaluation in Public Health. Results: The needs assessment validates and directs the development, implementation, and evaluation of the online guide illustrating an FCC approach. The online guide centralizes and organizes education by selecting education topics that relate to each stage of the NICU journey. This family-directed design enables families’ access to consistent and reliable information and offers them an opportunity to learn at their own pace. Conclusion: The process of creating, implementing, and evaluating an online family education program for FHA NICUs elucidates the intricacies and the advantages of integrating FCC into NICU practice.

The gendered effects of family migration law: contextual interpretation as a possible judicial remedy

At all normative levels, family migration law can disproportionally and negatively affect immigrant women’s rights in this field, producing gendered effects. In some cases, such effects are related to the normative and judicial imposition of unviable family-related models (e.g., the ʻgood mother ̕ the one-breadwinner family, or a rigid distinction between productive and reproductive work). In other cases, they are due to family migration law’s overlooking of the specific needs and difficulties of immigrant women, within their families and in the broader context of their host countries’ social and normative framework.To effectively expose and correct this gender bias, in this article I propose an alternative view of immigrant women’s right to family life, as a cluster of rights and entitlements rather than as a mono-dimensional right. As a theoretical approach, this construction is better equipped to capture the complex experiences of immigrant women in the European legal space, and to shed light on the gendered effects generated not by individual norms but by the interaction of norms that are traditionally assigned to separated legal domains (e.g., immigration law and criminal law). As a judicial strategy, this understanding is capable of prompting a consideration by domestic and supranational courts of immigrant women not as isolated individuals, but as ‘individuals in context’. I shall define this type of approach as ‘contextual interpretation’, understood as the consideration of immigrant women in the broader contexts of their families, their host societies and the normative frameworks applicable to them. Performed in a gendersensitive manner, a contextual judicial interpretation has the potential to neutralize the gendered effects of certain family migration norms. To illustrate these points, I will discuss selected judicial examples offered by the European Court on Human Rights, as well as from domestic jurisdictions of countries with a particularly high incidence of immigrant women (Italy and Spain).

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Parental alcohol use and resilience in young people: A study of family, peer and school processes

Funded by HSC R&D Division, Public Health Agency Parental alcohol misuse or ‘hidden harm’ presents a very significant challenge to public health policy and practice in the UK and internationally. A parent’s alcohol problems can have a profound impact on their children. Children depend on their family to meet their physical, psychological and social needs, their economic security and well-being, all of which can be jeopardised by parents misusing substances (NACD, 2011). The prevalence of parental alcohol misuse is extremely difficult to estimate, due to the ‘hidden’ nature of the problem within the family unit. Approximately 40,000 children in Northern Ireland are estimated to live with parental alcohol misuse (DHSSPS, 2008). In the UK, 30% of children (3.3 to 3.5 million) under 16 years, live with at least one binge drinking parent and 22% of children (2.6. million) with a hazardous drinker (Manning et al., 2009).  

The use of solar colletor for heating and electricity for a single family house

The presented work is related to the use of solar energy for the needs of heating and electricity for a single house located in Poland. Electricity will provided by energy conversion in the turbine by means of Organic Rankine Cycle (ORC), in which the operating medium (water heated in solar collector) is heating refrigerator in the heating exchanger. The solar installation is integrated with heat accumulator and wood boiler, which is used in the situation that collector is not enough to fill requirements of thermal comfort. There are chosen also all the necessary components of the system. In the work is also performed the economic assessment, by F chart method, to evaluate the profitability of the project, taking into total costs and savings.

A longitudinal qualitative exploration of healthcare and informal support needs among survivors of critical illness: the RELINQUISH protocol.

Introduction and background: Survival following critical illness is associated with a significant burden of physical, emotional and psychosocial morbidity. Recovery can be protracted and incomplete, with important and sustained effects upon everyday life, including family life, social participation and return to work. In stark contrast with other critically ill patient groups (eg, those following cardiothoracic surgery), there are comparatively few interventional studies of rehabilitation among the general intensive care unit patient population. This paper outlines the protocol for a sub study of the RECOVER study: a randomised controlled trial evaluating a complex intervention of enhanced ward-based rehabilitation for patients following discharge from intensive care. Methods and analysis: The RELINQUISH study is a nested longitudinal, qualitative study of family support and perceived healthcare needs among RECOVER participants at key stages of the recovery process and at up to 1 year following hospital discharge. Its central premise is that recovery is a dynamic process wherein patients’ needs evolve over time. RELINQUISH is novel in that we will incorporate two parallel strategies into our data analysis: (1) a pragmatic health services-oriented approach, using an a priori analytical construct, the ‘Timing it Right’ framework and (2) a constructivist grounded theory approach which allows the emergence of new themes and theoretical understandings from the data. We will subsequently use Qualitative Health Needs Assessment methodology to inform the development of timely and responsive healthcare interventions throughout the recovery process. Ethics and dissemination: The protocol has been approved by the Lothian Research Ethics Committee (protocol number HSRU011). The study has been added to the UK Clinical Research Network Database (study ID. 9986). The authors will disseminate the findings in peer reviewed publications and to relevant critical care stakeholder groups.

FAMILY CHARACTERISTICS, STATE PROGRAM EFFECTIVENESS, AND REPORT OF INADEQUATE CARE AMONG FAMILIES OF YOUNG CHILDREN WITH HEARING LOSS

Approximately 1.6 per 1,000 newborns in the U.S. are born with hearing loss. Congenital hearing loss poses a risk to their speech, language, cognitive, and social-emotional development. Early detection and intervention can improve outcomes. Every state has an Early Hearing Detection and Intervention program (EHDI) to promote and track screening, audiological assessments and linkage to early intervention. However, a large percentage of children are “lost to system (LTS),” meaning that they did not receive recommended care or that it was not reported. This study used data from the 2009-2010 National Survey of Children with Special Health Care Needs and data from the 2011 EHDI Hearing Screening and Follow-Up Survey to examine how 1) family characteristics; 2) EHDI program effectiveness, as determined by LTS percentages; and 3) the family conditions of education and poverty are related to parental report of inadequate care. The sample comprised 684 children between the ages of 0 and 5 years with hearing loss. The results indicated that living in states with less effective EHDI programs was associated with an increased likelihood of not receiving early intervention services (EIS) and of reporting poor family-centered communication. Sibling classification was associated with both receipt of EIS and report of unmet need. Single mothers were less likely to report increased difficulties accessing care. Poor and less educated families, assessed separately, who lived in states with less effective EHDI programs, were more likely to report non-receipt of EIS and less likely to report unmet need as compared to similar families living in states with more effective programs. Poor families living in states with less effective programs were more likely to report less coordinated care than were poor families living in states with more effective programs. This study supports the conclusion that both family characteristics and the effectiveness of state programs affect quality of care outcomes. It appears that less effective state programs affect disadvantaged families’ service receipt report more than that of advantaged families. These findings are important because they may provide insights into the development of targeted efforts to improve the system of care for children with hearing loss.

"Family Education and Support" program for families at psychosocial risk: the role of implementation process

This paper analyses the implementation characteristics of the Family Education and Support program, a theory-driven, needs-based, and evidence-based positive parenting program originally developed for the Andalusian family preservation services. The implementation process of 34 trials of the FAF program with 155 participants was analyzed. Cluster analyses were also performed to explore variability in implementation conditions from a comprehensive perspective. Results showed different implementation profiles that moderated the FAF effectiveness (namely lengthier interventions, higher program fidelity, and practitioners' positive perceptions and satisfaction with the program). The relevance of examining implementation process across several trials is discussed in order to distinguish core and non-core FAF components, as well as the need for combining faithful and adaptable implementations that guarantee the ecologic validity of evidence-based positive parenting programs.

What Determines the Innovativeness of Polish Family Firms? Empirical Results and Theoretical Puzzles

This article will review and synthesize the existing research on the innovativeness of Polish family firms in order to separate universal factors that influence the degree of innovativeness of firms from the factors which distinctively influence the innovativeness of family firms. To better assess the innovation propensity of family firms the author will work out the typology by combining the variety of innovations with particular features of family firms and the industrial context. A more nuanced approach will help to understand why the academic literature is inconclusive with regards to the question of whether family firms are anti-innovative (as some authors claim), pro-innovative or ambivalent with regard to innovations. In particular it will be argued that when assessing family firms’ innovativeness special attention needs to be paid to the impact of the management of intergenerational change on the propensity to innovate, as this process relates to the capacity for investments into innovativeness and the time horizon of the owner’s decisions.